Lethal Problems with Medical Futility and Disability Bias

In 2018,  Chris Dunn survived a freak diving accident that left him paralyzed, mostly blind and on a ventilator to breathe.  He spent most of the next year in an ICU in rural Maine.

Unable to see, eat, breathe or move on his own, the 44 year old father and concrete work spent his days in bed listening to the History Channel and hoping for a chance to show he could do more.

Efforts to find a rehab center failed. Even worse, hospital administrators and others were encouraging Chris’s mother Carol to put him in hospice to die.  As the article states:

“Drugged up and confined to bed, Chris waited while dealing with a hospital staff that didn’t know what to do with him. ‘There would be nurses that would come in and tell me, ‘You know you’re making your son suffer,’ says Carol. ‘I mean, what’s a mother to do with that?’”  (Emphasis added)

However, Carol refused to give up trying to find help for Chris and after 7 months, finally contacted the United Spinal Association. Jane Wierbicky, a longtime nurse and a member of the Association’s Resource Center team worked to help find a rehab center in Atlanta.

Now Chris only uses the ventilator a few hours a night, got outdoors to catch a fish, and returned home to spend Thanksgiving with his mother and girlfriend.

With the help of his mother and a team of advocates, Chris hopes to eventually live in an accessible apartment.

Medical care for Chris was not futile.

MEDICAL FUTILITY

The National Council on Disability defines “medical futility” as

“an ethically, medically, and legally divisive concept concerning whether and when a healthcare provider has the authority to refuse to provide medical care that they deem ‘futile’ or ‘nonbeneficial’. A “medical futility decision” is a decision to withhold or withdraw medical care deemed “futile” or “nonbeneficial.” (Emphasis added)

Because of my professional and personal experiences with disability bias as well as my volunteer work with people with disabilities, I have seen firsthand the potentially lethal effects of medical futility decisions based on disability. I have been writing on this topic for years, most recently on Missouri’s Simon’s Law enacted after the parents of a baby with Trisomy 18 and a heart defect who died later found out that doctors had ordered a “Do Not Resuscitate” and withheld life-sustaining treatment without their knowledge due to a secret medical futility policy at the Catholic hospital treating their son.

Recently, I found out that the National Council on Disability just published a 82 page comprehensive report titled “Medical Futility and Disability “  as part of a five-report series on the intersection of disability and bioethics.

In a letter to President Trump, the Council chairman states that the series:

“focuses on how the historical and continued devaluation of the lives of people with disabilities by the medical community, legislators, researchers, and even health economists, perpetuates unequal access to medical care, including life-saving care.

and notes that:

“In recent years, there has been a push to regulate medical futility decisions on the state and institutional levels. State laws, which vary greatly in their content and approach, define the protections, or lack thereof, of a patient’s wishes to receive life-sustaining treatment. Hospitals have turned to process based approaches, utilizing internal ethics committees to arbitrate medical futility disputes. Despite the increased attention, however, disability bias still finds its way into futility decision making.” (All emphasis added)

The Council identifies four factors that are influencing the futility debate today: “Advanced life-saving medical technology, Changes in healthcare reimbursement, Evolving concepts of patient autonomy and the Rise of the right-to-die movement”.

The report also extensively explores the legal issues  and several court decisions involving medical futility like the Terri Schiavo and Haleigh Poutre cases.

STATE LAWS

The Council report also evaluated current state laws regarding medical futility decisions and found only 11 with strong patient protections, 19 without patient protections, 19 with weak patient protections, and 2 with time-limited patient protections.

Further complicating the state laws is the lack of transparency for patients or other family members regarding an institution’s medical futility policies. Hospitals are rarely transparent with their medical futility policies, as in the Simon’s Law case. The report is right when it states that “the disclosure of medical futility policies is essential to providing patients, their surrogates, and their families with the information they need to protect their rights and ensure accountability”.

The Council also notes that “Disability nondiscrimination laws, including the ADA and Section 504 of the Rehabilitation Act, provide a viable, yet largely unexplored vehicle for enforcing the rights of people with disabilities in the medical futility context.”

The report ends with recommendations for Congress, the executive branch, medical and health professional schools, professional accreditation bodies, healthcare insurers and state legislatures to combat the problem of disability bias in healthcare.

CONCLUSION

One of the reasons I chose to become a nurse decades ago was the strong ethical principles in medicine. We were educated to treat all patients to the best of our ability regardless of race, disability, socioeconomic status, etc.  “Quality of life” was something to improve, not judge. The traditional hospice philosophy was to neither hasten nor prolong dying.

But over time, I saw ethics change. As the report itself notes, the advances in technology, changes in health care reimbursement, evolving concepts of patient autonomy and the rise of the right-to-die movement led to radical changes in both law and medical ethics.

The concept of medical futility was no longer limited to medically certain circumstances of treatment ineffectiveness but, all too often, also to the patient’s (and sometimes the family’s) perceived “quality of life”.

Such disability bias is often unrecognized, even by the medical professionals caring for the person, but it is a real bias that must be eliminated in our society.

I admire people like Chris Dunn and his determined mother who show us the possibilities when people with even severe disabilities get a chance to have the best life possible.

 

 

 

 

 

 

 

 

Down Syndrome, the Gift of Innocence, and Abortion

In a beautiful op-ed in the December 23, 2019 Wall Street Journal titled “Down Syndrome and the Gift of Innocence” , William McGurn writes about a small group of contemplative nuns called the Little Sisters Disciples of the Lamb who reside in France.

The order was founded in 1985 by Mother Line, now prioress, and Sister Véronique, who felt a vocation but could not find an order to accept her because she has Down syndrome. Now there are 10 sisters (eight with Down syndrome) who exist so that “those who are in last place in the world”—women with Down syndrome—can “hold in the church the exceptional role of spouses of Christ. In practice this means that able-bodied sisters devote their lives to ensuring their fellow sisters with Down syndrome can live their vocations.”:

“The smiling faces of our little sisters with Down syndrome are a great message of hope for many injured families,” Mother Line tells me. “Our smallness will also say that we are made for very great things: to love and to be loved.”

And while the rest of the world dismisses innocence as naïve or childish, Mr. McGurn writes that:

“the nuns choose to cherish and exalt innocence—and the unconditional love and trust that comes with it—as an example of how we are meant to live with one another.”

DOWN SYNDROME AND ABORTION

In contrast to these wonderful nuns, a federal judge recently reversed his own ruling on a hard-fought pro-life abortion law passed in my home state of Missouri by blocking a provision that prohibits discriminatory abortions on unborn babies with Down syndrome.

Missouri was set to join several other states that passed such laws until U.S. District Judge Howard Sachs reversed his decision.

It is hoped that this decision will be appealed. As Justice Clarence Thomas has previously written about such laws that protect unborn babies from eugenic discrimination:

“… this law and other laws like it promote a State’s compelling interest in preventing abortion from becoming a tool of modern-day eugenics.”

and

“Although the Court declines to wade into these issues today, we cannot avoid them forever. Having created the constitutional right to an abortion, this Court is dutybound to address its scope.” (All emphasis added)

AN “ACCEPTABLE” PREJUDICE?

A few days ago, the head of the American Civil Liberties Union (ACLU)  Disability Rights Project Susan Mizner defended abortion for unborn babies with Down Syndrome writing that:

“There is no question that stigma, prejudice, and misconceptions about people with disabilities are widespread. But forcing someone to carry a pregnancy to term against their will does nothing to tackle underlying and systemic ableism and discrimination against people with disabilities.

“On the contrary, forced pregnancy threatens a person’s physical, mental, and emotional health, as well as the stability and wellbeing of their family, including existing children.” (All emphasis added)

As an RN and mother who had to fight medical discrimination against my daughter Karen who had both Down Syndrome and a heart defect as well as a past board member of the St. Louis Down Syndrome Association, I take great exception to this dangerously inaccurate statement. We can never eliminate prejudice by eliminating people with disabilities before or after birth.

CONCLUSION

I applaud the Little Sisters Disciples of the Lamb in France who cherish their sisters with Down Syndrome who have so much to give to the world and I am horrified by the several states that have now passed laws that allow abortion for any reason at any time during pregnancy or even after birth.

Although unborn babies with Down Syndrome are especially at risk, we must remember that ALL children enter the world with the “gift of innocence” and none deserve to be killed before birth.

 

Can Getting a DNR Tattoo be Hazardous to Your Health?

Cardiopulmonary resuscitation (CPR) is a lifesaving technique developed in the 1960s  for emergencies such as a heart attack or near drowning when a person’s breathing or heartbeat has stopped. Even non-medical people can be trained in basic CPR. However, not every person can be saved with CPR and some who do survive can have some brain damage.

In the early 1970s when I was a young ICU nurse, patients who appeared to be dying or their families could agree to a “do not resuscitate” (DNR) order.

But the 1991 Patient Self-Determination Act, along with the so-called “right to die” cases like Nancy Cruzan and Karen Quinlan, resulted in  the widespread use of DNR orders in hospitals.

So now after years of concern with rising health care costs, older people worried about becoming a “burden” to their adult children, and the push for people to sign “living wills” to refuse certain treatments if they become incapacitated,  it should not be a surprise that a growing number of people-including young, healthy people-are getting DNR (do not resuscitate) tattoos.

But what does that mean when an unconscious person is rushed to an emergency room?

Recently, there was a serious discussion of an actual case and a poll on ethics and DNR tattoos in MedPage, a newsletter for health care professionals.

The case involved a patient who arrived in an emergency room and unconscious after suffering a heart attack while jet skiing on vacation. He had ‘Do Not Resuscitate’ tattoo on his chest. There was a signature under the tattoo. However, the ambulance crew called restarted his heart with a defibrillator. The man was stabilized but hours later he has another heart attack.

The poll question and results from the 1580 votes were:

“Do you comply with the DNR tattoo or not?

Yes: 43.04%

No: 56.96%”

I was appalled that 43% would treat a DNR tattoo as the equivalent of a legal document and I agree with the reasoning of the lawyer/doctor reviewing this case who wrote that “the legally correct course of action would be to temporarily ignore the tattoo unless and until evidence that the tattoo reflects the patient’s current thinking is brought forth.”

PROBLEMS WITH DNR ORDERS

Unfortunately in hospital situations, DNR orders are sometimes misinterpreted as not wanting to live  or “do not treat” when the person had assumed it would apply only in extreme circumstances.

For example, a new nurse was taking care of a young girl with mental retardation who was eating when she suddenly started choking. The new nurse ran to her head nurse in a panic and was told that, because the parents agreed to a DNR order, the nurses could only just hold her hand!

Obviously, relieving the choking by removing the food should have been done.

CONCLUSION

The results of not understanding  DNR orders can be tragic but too many people-including medical professionals-don’t realize the legal and ethical ramifications.

Personally, I chose to make a durable power of attorney for health care naming my husband as the decision maker if I could not speak for myself rather than a “living will” or other advance directive with various treatments to check off if I can’t speak for myself.

I want all the options, risks and benefits of treatments fully explained to my decision maker based on my current condition so that he make an informed decision. This would include the use of a DNR if or when I am dying.

What we all desperately need now is more awareness and common sense when it comes to asking for or allowing a “Do Not Resuscitate” order, especially a DNR tattoo.

 

Exposing Abortion: “The Silent Scream” and “Unplanned”

In 1985, I was asked to show the new film “The Silent Scream” (still online) at a local community college for the students. I was anxious to show this amazing 30 minute film showing an actual abortion on ultrasound and narrated by the late Dr. Bernard Nathanson, a former abortionist who was the co-founder of the National Association for the Repeal of Abortion Laws (NARAL) in 1969.

Dr. Nathanson later deeply regretted his actions, and earned the enmity of the abortion movement by exposing the “deceptions, dirty tricks, and other tactics that helped make abortion legal and socially acceptable in the United States”.

His “The Silent Scream” film was his effort to get the truth about abortion to the nation and it caused a lot of controversy.

When I showed the film at the community college, I was seven months pregnant and had a bumper sticker that said “Every child deserves a birthday”. My mother supported my pro-life work but was worried about my speaking publicly. “Someone may try to shoot you!” she warned.

I just laughed at the time but when I got to the college I saw an armed guard also attending. He said he was there because there were death threats about showing this film. Although nothing happened and the students were very receptive to the film’s message, I was a bit shaken but hopeful that this film would help end the abortion nightmare.

34 years later, the battle to end abortion continues.

I thought of Dr. Nathanson’s film when I was finally able to see the 2019 movie “Unplanned” that, like “The Silent Scream”, also caused tremendous controversy. Some theaters refused to show it and many film critics panned it but the movie was a surprising success at the box office.

“Unplanned” is a great sequel to “The Silent Scream” because it depicts the true story of Abby Johnson, an ambitious young woman who became the director of an abortion clinic and thought she was helping women.

Abby slowly and painfully finally learns the truth about both medical and surgical abortions and the real effects on women-including herself. The effect is both eye-opening and heartbreaking. Abby Johnson now helps other abortion clinic workers like herself as well as the public to see the truth about the enormous damage abortion causes.

Although “Unplanned” is no longer in theaters, it is available for purchase or online streaming on TV and well worth seeing and sharing with others.

Thank you, Abby Johnson and Dr. Nathanson, for your courage in sharing your stories. We will never know how many born and unborn lives you have saved!

 

 

Press Release: The National Association of Pro-life Nurses On Federal Judge Blocking North Dakota Law Informing Women of Abortion Pill Rescue Reversal

The National Association of Pro-life Nurses (NAPN) joins the American Association of Pro-life Obstetricians and Gynecologists, Heartbeat International   and the Alliance Defending Freedom in responding to the September 13, 2019 decision by a federal judge granting the American Medical Association’s (AMA) motion for a temporary injunction blocking the new North Dakota law requiring doctors to inform women seeking medical pill abortions about abortion reversal if they change their minds.

Already, 8 other states have passed abortion pill reversal informed consent laws with at least 750 babies saved.

The AMA’s position is that this information is a “government mandated message that they would not otherwise recite and refer their patients to government-created materials and government-sanctioned referrals about an experimental medical treatment that has not been proven safe and effective or approved by the FDA, that violates accepted ethical standards and best practices in medical care, that undermines Physicians’ ability to provide their patients with the highest standard of medical care, and that contradicts Physicians’ viewpoints.” (Emphasis added)

In reality, the abortion reversal drug progesterone is a natural pregnancy hormone to grow the placenta and provide nourishment for the unborn baby. It is sometimes given to pregnant women who have or have had bleeding, miscarriage, infertility or other problems as well as routinely with in vitro fertilization.

In medical pill abortions, the first abortion drug mifepristone blocks this natural progesterone while the second abortion drug misoprostol is usually taken by the woman 36-72 hours later to cause expulsion of the unborn baby.

If progesterone is given before the second abortion pill, the chances of the baby surviving increase from 25% (the survival rate without natural progesterone) to 68% (the average survival rate after giving natural progesterone)The timing between the first and second drug is the crucial window where abortion reversal if possible.

There is even a website at www.abortionpillreversal.com for information on abortion reversal that includes a hotline phone number at 1-877-558-0333.

But unfortunately, this is critical information that Planned Parenthood and the AMA apparently don’t want women to get.

It is ironic that the abortion industry constantly proclaims that the public should just “trust women” when it comes to abortion but apparently it does not trust women with the truly informed consent required before any other treatment or procedure.

Contact

Marianne Linane RN, MS, MA, National Association of Pro-Life Nurses Executive Director

📞  (202) 556-1240
✉  Director@nursesforlife.org

Nancy Valko, RN ALNC Spokesperson for the National Association of Pro-Life Nurses

📞 (314) 504-5208

Website: www.nursesforlife.org

Facebook: https://www.facebook.com/Nurses4life/

Two Disturbing Articles about the Education of Doctors and Nurses

A September 12, 2019 Wall Street Journal op-ed titled “Take Two Aspirin and Call Me by My Pronouns- At ‘woke’ medical schools, curricula are increasingly focused on social justice rather than treating illness” exposed the problem with including politically popular courses at the expense of hard science.

This was preceded by an August 23, 2019 MedPage article titled A Radical Change to Nursing Board Exams” that exposed a “A lack of situational teaching in clinical settings has led to inadequate skills in critical thinking and decision-making on the part of novice new graduate nurses” resulting “in an epidemic of poor clinical judgment among novice nurses, preventing them from making the best decisions for their patients and incurring huge costs to the institutions where they work for longer orientation periods and malpractice lawsuits.” (Emphasis added)

It is hoped that this new nursing board exam will force nursing schools to make clinical judgment and clinical experiences a central part of nursing education.

I was shocked but not actually surprised by these two disturbing articles.

NURSING EDUCATION

I started to notice the problems some new nurses were having several years ago after the traditional 3 year nursing diploma education in hospitals was  phased out in favor of 2 year associate degree programs (ADN) and 4 year bachelor degree programs (BSN) with less clinical experience.

Many of our new nurses had trouble with decision-making and couldn’t function well in the hospital. Many were demoted to nursing assistant or left after their trial period. I tried to personally help some of these new nurses who were obviously dedicated and wanted to do their best for their patients but many froze from the fear of making a wrong decision.

These new nurses needed more continuous help than I could give so I talked to nursing supervisors but the situation did not change much.

In the meantime, my hospital announced that every nurse now must have a bachelor degree in nursing (BSN) by 2021. This started at many hospitals after a 2010 Institute of Medicine paper recommended a goal that 80% of nurses have a BSN by 2020. RN to BSN programs then proliferated, eventually even online.

Most of my fellow nurses who took these BSN courses on their own time while working full-time complained to me that these courses were not especially helpful clinically and more geared to management preparation and community education. They also complained about exhaustion and difficulty managing family, work and study. Several wound up getting sick themselves.

Although the hospital helped with the expense of the BSN degree, the hourly salary increase for a BSN only went up to 10 cents more an hour when I was there.

MEDICAL EDUCATION

In the September 12, 2019 Wall Street Journal op-ed “Take Two Aspirin and Call Me by My Pronouns”  by Dr. Stanley Goldfarb, a former associate dean of curriculum at the University of Pennsylvania’s School of Medicine, highlights  another but similar problem. He asks “Why have medical schools become a target for inculcating social policy when the stated purpose of medical education since Hippocrates has been to develop individuals who know how to cure patients?”

He complains that:

“These educators focus on eliminating health disparities and ensuring that the next generation of physicians is well-equipped to deal with cultural diversity, which are worthwhile goals. But teaching these issues is coming at the expense of rigorous training in medical science. The prospect of this “new,” politicized medical education should worry all Americans.” (Emphasis added)

He also states that:

“The traditional American model first came under attack by progressive sociologists of the 1960s and ’70s, who condemned medicine as a failing enterprise because increased spending hadn’t led to breakthroughs in cancer treatment and other fields. The influential critic Ivan Illich called the medical industry an instrument of “pain, sickness, and death,” and sought to reorder the field toward an egalitarian social purpose. These ideas were long kept out of the mainstream of medical education, but the tide of recent political culture has brought them in.” (Emphasis added)

He concludes:

“Meanwhile, oncologists, cardiologists, surgeons and other medical specialists are in short supply. The specialists who are produced must master more crucial material even though less and less of their medical-school education is devoted to basic scientific knowledge. If this country needs more gun control and climate change activists, medical schools are not the right place to produce them.” (Emphasis added)

After an apparent avalanche of criticism, the Wall Street Journal wrote an editorial defending Dr. Goldfarb’s op-ed stating:

“Patients want an accurate diagnosis, not a lecture on social justice or climate change. Thanks to Dr. Goldfarb for having the courage to call out the politicization of medical education that should worry all Americans.” (Emphasis added)

CONCLUSION AND SOLUTIONS

I became an RN fifty years ago in what I now call a “golden age”.

Before we could even be admitted to nursing school, we had to submit a character reference. My fellow nursing students were as excited and dedicated as I was to become the best nurse possible for our patients. We regularly saw programs like “Marcus Welby, MD” and “Medical Center” where doctors and nurses worked tirelessly and bravely to help their patients.

When my preferred hospital changed its nursing program from a 3 year diploma program to a 2 year ADN program, I was worried but decided to trust the hospital. However, I felt somewhat unprepared after graduation and found a 1 year nursing internship program at another hospital that gave me supervised clinical experience in every area.

Not only did that increase my competency, it changed my mind from specializing in pediatrics to critical care. I think that such programs should be encouraged at every hospital for new nurses to help solve the problem of poor decision-making and clinical judgement. Nothing substitutes for actual clinical experience which is in short supply  in many ADN and BSN programs.

Also 50 years ago, rigorous ethics were an important part of our nursing education with “do no harm” to patients, report our mistakes, never lie, advocate for our patients regardless of age, socioeconomic status or condition, etc. incorporated as standard requirements. We happily took the Nightingale Pledge.

However in the 1970s, I saw ethics slowly become “bioethics”. The tried and true Hippocratic Oath principles requiring high ethical and moral standards for doctors including prohibitions against actions such as assisting suicide and abortion gave way to “bioethics” with essentially four principles:

1. Respect for autonomy (the patient’s right to choose or refuse treatment)

2. Beneficence (the intent of doing good for the patient)

3. Non-maleficence (not causing harm)

4. Justice (“fair distribution of scarce resources, competing needs, rights and obligations, and potential conflicts with established legislation”)

Unfortunately, those principles are malleable and then used to justify actions and laws that would be unthinkable when I graduated. That bioethics mindset slowly changed not only medical and nursing education but also the principles that informed our work.

While we cannot recreate the past, we can reform our medical and nursing education and practice to return these professions-and our medical and nursing associations-to positions of trust. This is crucial not only for our professions but also for our patients and the public.

 

Here is What Sara Buscher Wrote to a Senator about the PCHETA

I have written before about the Palliative Care and Hospice Education and Training Act (PCHETA) that has now been reintroduced in 2019 but today, I have a guest column.

Sara Buscher recently wrote a well-researched letter to her congressman opposing the new PCHETA bill and has given me permission to use it here.

To find your state’s House of Representative member, go to https://www.house.gov/representatives/find-your-representative

To find your US Senator. go to https://www.senate.gov/senators/index.htm and type your state into the search box near the end.

September 8, 2019

Via Email to sean_riley@ronjohnson.senate.gov

The Honorable Ron Johnson

United States Senate

Washington, DC 20510

September 8, 2019

RE:      Palliative Care and Hospice Education Training Act (PCHETA),

  1. 2080 (in Senate HELP Committee) and related bill H.R. 647

Dear Senator Johnson:

I am a retired attorney and C.P.A. who served on Governor Tommy Thompson’s task force on health care costs. I managed employee benefit programs for the State of Wisconsin and later at the University of Wisconsin. As a lawyer in private practice, I advocated for the elderly and disabled. I currently serve on the board of the Euthanasia Prevention Coalition – USA.

I urge you to object to this bill being “hot-lined,” oppose it and vote against it. As one accountant to another, this bill is a rip off. In effect it will help create a second tier of health care where people receive poorer care, and are sometimes euthanized. The bill provides federal funding for palliative care medical education and a public awareness option for “selling” palliative care to patients and their families. Palliative care grew out of and includes hospice care. It provides an earlier pathway to hospice care.

Government Funding is Unneeded

Government funding is not needed. If enacted, the bill will cost the federal government $86 million over the next four years.[1] Palliative care has already spread rapidly.[2] Through 2006, the George Soros’ Open Society Institute and the Robert Wood Johnson Foundation spent more than $200 million to develop and expand palliative care.[3] With philanthropic[4] funding, palliative care has grown to the point that more than 80% of US patients who are hospitalized for serious illness have access to it.[5] Over 2017-19, $40 million is being spent to develop community programs for serious illness.[6]

We know that philanthropic funding did not stop when the bill failed to pass two years ago. During that time, palliative care has continued to expand. If enacted, this bill would replace philanthropic dollars with federal tax dollars. So, this bill would benefit those who want to reshape medicine for the rest of us according to their worldview.

 Elusive Cost Savings

If there are any savings, which is questionable as discussed below, providers would likely keep them. When the government pays a flat fee, like Medicare and Medicaid do for hospitalizations, the providers keep all the savings.[7] For example, if Medicare or Medicaid pays $20,000 per case and the hospital spends only $13,000, thereby saving $7,000, the government still pays $20,000 and provider keeps $7,000. The same is true of all the managed care programs and hospice. Industry proposals would have Medicare pay for palliative care like it does for hospice with a flat daily fee.[8]

I am concerned that palliative care, like its older sister hospice will not live up to its cost savings hype. Palliative care researchers are claiming they can save end of life costs that hospice and advance care planning also claim to be saving. It just isn’t possible to save the same costs (use of Intensive Care Units (ICUs), reducing hospitalizations, and reducing aggressive care at the end of life) more than once.

A study done for the Medicare Payment Advisory Commission (MedPAC) found Medicare hospice benefits have not lowered Medicare costs in the last year of life.[9] According to the consultant, some researchers showed hospice saved money by picking time periods that compared apples to oranges.[10]

Enactment Could Erase Medicare Fraud Recoveries

The HHS Office of Inspector General says hospices are defrauding Medicare of hundreds of millions of dollars by enrolling people who are not terminal and then billing Medicare at the highest rates.[11] Hospices are already using palliative care as a “loss leader” to enroll more patients into hospice earlier.[12] Hospices make more money by enrolling people who are not eligible for hospice as they need less care.[13] As a result, for-profit hospices are the most profitable Medicare-financed health service. Id. They expect palliative care to become as profitable.[14] Competition will drive out small non-profit hospices.[15]

The PCHETA bill could erase Medicare fraud recoveries by extending palliative care including hospice to those with a “serious or life threatening illness,” the definition of which is to be decided after enactment with input from hospice and palliative care insiders (Bill Section 4 creating section 904(c)(3)). If defined in a way that allows end of life hospice-like care to be called palliative care, it would legitimize enrolling the people who are now being fraudulently enrolled in hospice. Medicare spent $9.5 billion on hospice benefits for patients who outlived their terminal prognosis in 2016.[16] Nearly half of hospices are unsure they could pass a government audit, saying their biggest concern is their enrollment of people who are not terminal. Id. So, this bill could benefit those who game the system.

A Government Stamp of Approval May Hoodwink People

Palliative care can start alongside normal medical care and then eventually shift to hospice care without access to normal medical care. The HHS Office of Inspector General (OIG) reported that people were inadequately informed about the consequences of enrolling in hospice and some were placed in hospice completely without their knowledge.[17] In California, the Senior Medicare Patrol reported that elderly people living in their own homes were approached by nurses and sold housekeeping services that turned out to be Medicare hospice enrollment, leaving them without access to their medications and with unpaid medical bills.[18]

A government stamp of approval may lead more people to poor palliative care and in some cases, euthanasia. Last year, the HHS-Office of Inspector General (OIG) reported that hospice enrollees were receiving poor care.[19] More recently, HHS-OIG reported that 80% of hospices had deficiencies that posed risks to beneficiaries, with 20% jeopardizing patients’ health.[20]

Instances of patients being overdosed to unconsciousness until they die (this is called “palliative sedation” or “terminal sedation”) have increased according to Duke University professor Farr Curlin, M.D.:

Many patients and their families don’t trust HPM [Hospice and Palliative Medicine] and are resistant to it.… These individuals tell stories about loved ones who declined slowly over time, fighting the good fight with the support and companionship of their family members and friends. When HPM professionals became involved in their care, their loved ones were put on powerful drugs, became unconscious and unresponsive, and were soon dead. These stories are clearly shared within communities and powerfully shape people’s perceptions of HPM, which many see as a sophisticated and seductive way of getting people to die.[21]

I was involved in a case where a family member authorized pain relief for her sister and was assured the staff would keep her warm in a snugly blanket because she was always cold. Three hours later, she was dead after massive repetitive doses of powerful drugs.

To maximize profits, the director of Novus Health Services regularly directed nurses to make hospice patients “go bye-bye” with overdoses of drugs like morphine.[22] Novus is now facing a $60 million Medicare fraud indictment.[23]

Clinical practices in palliative medicine regularly result in shortening lives.[24] In one study, 39% of physicians and nurses said they intended to shorten survival with medications and treatment withdrawals.[25] A survey of over 800 hospice and palliative care physicians revealed 45% would sedate patients who were not actively dying to unconsciousness and then withhold food and fluids until they died.[26] One-fourth of them said it did not matter to them how long the patient had to live. Id.

I hope you will do everything you can to kill this bill.

Sincerely,

Sara Buscher

[1] https://www.cbo.gov/publication/54309

[2] https://www.medscape.com/viewarticle/892289

[3] Palliative Care Grantmaking Snapshot Report 2009 (data up to 2006) at page 4, available at amydwrites.com/yahoo_site_admin/assets/docs/Palliative_Care_Grantmaking_Snapshot_Report.13155115.pdf

[4] “Mr. Soros is now funding a project that focuses on the development of palliative care globally. We help govern­ments develop pain and palliative care initiatives and policies.” https://www.mskcc.org/experience/physicians-at-work/kathleen-foley-work

[5] See note 2.

[6] https://www.healthaffairs.org/doi/full/10.1377/hlthaff.2017.0653 grant from Gordon and Betty Moore Foundation.

[7] J. Brian Cassel, Whose Costs Are Saved When Palliative Care Saves Costs?, Health Affairs Blog Sept. 2014 at https://www.healthaffairs.org/do/10.1377/hblog20140929.041603/full/

[8] See proposals via links at https://www.nationalcoalitionhpc.org/aahpm-pacssi-payment-model-ptac-results-a-win-for-patients-and-families/

[9] Spending in the Last Year of Life and the Impact of Hospice on Medicare Outlays (Updated August 2015), MEDPAC http://www.medpac.gov/docs/default-source/contractor-reports/spending-in-the-last-year-of-life-and-the-impact-of-hospice-on-medicare-outlays-updated-august-2015-.pdf?sfvrsn=0

[10] See note 9 at the Appendix.

[11] https://oig.hhs.gov/oei/reports/oei-02-16-00570.asp linking to the complete report.

[12] https://hospicenews.com/2019/05/14/study-71-of-u-s-adults-have-never-heard-of-palliative-care/ A loss leader is a service sold below cost to attract more customers who will then buy more profitable services. www.businessdictionary.com/definition/loss-leader.html

[13] For-profit hospices saw profit margins exceed 15 percent in 2012, according to a new report from the Medicare Payment Advisory Commission, known as MedPAC, which advises Congress on health policy. No other Medicare-financed health service was as profitable. https://www.huffpost.com/entry/hospice-report_n_55b1307ee4b0a9b94853fc7a 

The 2016 profit margin was 16.8%. http://www.medpac.gov/docs/default-source/data-book/jun19_databook_entirereport_sec.pdf?sfvrsn=0 at p 190.

[14] See note 12.

[15] hospicenews.com/2019/08/27/confessions-of-a-board-member-small-hospice-non-profits-will-not-survive/

[16] homehealthcarenews.com/2018/10/nearly-half-of-hospice-providers-uncertain-they-would-survive-an-audit/

[17] See note 19.

[18] https://cahealthadvocates.org/beneficiaries-pay-the-price-for-hospice-fraud/

[19] https://oig.hhs.gov/oei/reports/oei-02-16-00570.asp linking to the complete report.

[20] https://oig.hhs.gov/oei/reports/oei-02-17-00020.asp linking to the complete report.

[21] Farr A. Curlin, MD Hospice and Palliative Medicine’s Attempt at an Art of Dying, ch 4 in Dying in the Twenty-First Century, edited by Lydia Dugdale, MD, MIT Press 2015 at page 48.

[22] https://www.bizjournals.com/dallas/news/2016/03/30/novus-hospice-ceo-directed-nurses-to-overdose.html

[23] https://www.justice.gov/usao-ndtx/pr/sixteen-individuals-charged-60-million-medicare-fraud-scheme

[24] Cohen L, et al., Accusations of Murder and Euthanasia in End of Life Care, J Pall Med 2005.8.1096 at 1102.

[25] See note 24 at 1099.

[26] Plots created by Sahr N, Ph.D from data reported on in Maiser S et al., A Survey of Hospice and Palliative Care Clinicians’ Experiences and Attitudes Regarding the Use of Palliative Sedation, J Pall Med 2017 Sep;20(9):915-92.

Nurse Vindicated After Being Forced to Participate in an Abortion

In 2018, I wrote about “The New Federal Conscience and Religious Freedom Division” established by the Trump administration as a desperately needed help for those of us health care professionals whose conscience rights have been ignored or threatened and included a link to report complaints even online.   Now in fiscal 2018 alone, the division says it has received and dealt with more than 1300 complaints.

Most recently and thanks to the Conscience and Religious Freedom Division and with help from the American Center for Law and Justice, an unnamed nurse who was forced into assisting in an elective abortion in 2017 has been vindicated.

On August 28, 2019, the US Department of Health and Human Services, Office for Civil Rights (OCR) announced that, after a thorough investigation and attempts to resolve the issue, the OCR issued a Notice of Violation to the University of Vermont Medical Center (UVMMC) for forcing that nurse to assist in an elective abortion over her conscience-based objections and even though other nurses were available.

The OCR found that the UVMMC had discriminatory policies that assign or require employees to assist abortion procedures even after they record their moral or religious objections. UVMMC now must conform its policies to the long-standing Church amendments that protect the conscience rights of individuals or entities that object to performing or assisting abortions and take corrective action or “face potential action by the HHS from which UVMMC has received federal funding”.

The notice also noted that for the last 3 years UVMMC “reported that it cumulatively expended $1.6 million of federal financial assistance.”

The unnamed nurse, who no longer works at UVMMC, told the American Center for Law and Justice that she was misled into thinking she was assisting in a miscarriage but then found out that it was an elective abortion. However, her superiors “callously refused to relieve her”.  Fearing retaliation, she went through with assisting the abortion and was traumatized.

According to the American Center for Law and Justice, at least four other nurses, have now confirmed that they had been subjected to similar violations of their conscience rights.

As the American Center for Law and Justice also noted, even though the Church amendments were enacted after the US Supreme Court legalized abortion in 1973,  they always lacked a mechanism for enforcement by private citizens. Enforcement depended on the Health and Human Services department. Unfortunately that enforcement has, for all intents and purposes, been nonexistent until recently.

Now the new division has put some teeth into enforcement.

CONCLUSION

As I have written before, groups like Compassion and Choices (the former Hemlock Society) and Planned Parenthood have vehemently criticized the Conscience and Religious Freedom Division, claiming that it would allow medical professionals “to impose their own religious beliefs on their patients and withhold vital information about treatment options” as well as “pave the way for discrimination against people for a variety of reasons.”

The fundamental right not to perform or assist in deliberate death procedures terrifies these organizations that depend on medical professionals willing to assist suicides or perform abortions.

Therefore, we must all make sure that the whims of politics never again interfere with the fundamental right of medical professionals to “Do no harm”.  This is not only for their protection but also for our own.

 

 

 

The National Association of Pro-life Nurses Statement Opposing the Palliative Care and Hospice Education and Training Act (2019)

The National Association of Pro-life Nurses joins the Euthanasia Prevention Coalition USA and the Healthcare Advocacy and Leadership Organization (HALO) and other organizations in opposing the  Palliative Care and Hospice Education and Training Act (2019) H.R. 647, S.2080.  (HALO has issued an action alert with the contact numbers for legislators on the Senate committee considering this bill.)

As nurses, we strive to care for our seriously ill, disabled and terminally ill patients with compassion and the highest ethical standards. We applaud the medical innovations and supportive care options that can help our patients attain the highest quality of life possible.

However now many of us nurses are now seeing unethical practices such as assisted suicide, terminal sedation (with withdrawal/withholding of food, water and critical medicines), voluntary stopping of eating, drinking and even spoon feeding, etc. used to cause or hasten death but often called palliative, “comfort” or routine hospice care for such patients.

We believe that the Palliative Care and Hospice Education and Training Act (2019) will allow federal funding to teach and institutionalize such unethical practices without sufficient oversight, safeguards or penalties.

For example, the Section 5 Clarifications (p. 21) against federal funding for objectionable practices “furnished for the purpose of causing, or the purpose of assisting in causing, a patient’s death, for any reason” is toothless. Such practices are already  considered acceptable by many influential hospice and palliative care doctors like Dr. Timothy Quill, a board-certified palliative care physician, 2012 president of the American Academy of Hospice and Palliative Medicine and promoter of legalizing physician-assisted suicide and terminal sedation.

It is also disturbing the Compassion and Choice, the largest and best funded organization promoting assisted suicide and other death decisions,  has a mission statement stating:

“We employ educational training programs, media outreach and online and print publications to change healthcare practice, inform policy-makers, influence public opinion and empower individuals.”

and a “Federal Policy Agenda / 2016 & Beyond”  goal to:

Establish federal payment for palliative care consultations provided by trained palliative care professionals who will advocate for and support the values and choices of the patient….” (All emphasis added)

As nurses, we are also very concerned that the Act contains no conscience rights protection for those of us-doctors and nurses alike-who will do anything for our patients except deliberately end their lives or help them kill themselves.

Many of us have already faced threats of termination of employment for refusing to participate in unethical, life-ending practices without support from our nursing organizations like the American Nurses Association that recently dropped their traditional opposition to physician-assisted suicide and voluntary stopping of eating and drinking.

For the sake of protecting our patients, the integrity of our medical and nursing professions as well as our healthcare system, we urge the public and our congressional representatives to oppose this dangerous Act.

 

Pro-abortion Desperation in Missouri

In May of 2019, Missouri Governor Parsons signed one of the strongest pro-life laws in the country, the “Missouri Stands for the Unborn Act, and the last abortion clinic in Missouri lost its license because of numerous health and safety violations. The Planned Parenthood abortion clinic continues to operate only because of several temporary injunctions by a judge.

In an attempt to reverse the “Missouri Stands for the Unborn Act”, the pro-abortion American Civil Liberties Union of Missouri attempted to mount a public referendum against the abortion restrictions. However, the ACLU gave up this week, contending that it was impossible to collect the roughly 100,000 voter signatures needed for the referendum in the two weeks before most of the law takes effect.

Nevertheless, now the Missouri public defenders office is warning that “taxpayer-paid attorneys could soon face the prospect of defending poor women charged with felonies for knowingly performing or inducing their own abortions“. The Republican sponsors of the law have rejected this idea, citing that the law states a “woman upon whom an abortion is performed or induced in violation of this subsection shall not be prosecuted for a conspiracy to violate the provisions of this subsection.”  (Emphasis added)

These developments, along with other defeats such as the 10 other states passing strong pro-life laws just this year (some blocked by courts or currently facing lawsuits), is now revealing both the desperation and the extremism of Planned Parenthood and other pro-abortion groups to protect the abortion industry nationwide.

No longer is abortion called just a health care “choice”.

CONCLUSION

Decades ago when I joined the pro-life movement, I thought that once people learned the truth about the humanity of the unborn child as well as the damaging effects of abortion on the mother and society, the public would reject abortion as a solution.

I also thought the selfless and voluntary efforts by the pro-life movement to help desperate mothers and their families would change hearts as well as minds.

Instead, the pro-life movement was called “dangerous” and “heartless” by the politically powerful and media-supported abortion establishment.

But since 1973 when the infamous Roe v Wade decision by the US Supreme Court opened the floodgates of killing by “choice”, the pro-life movement continued to persist with every small positive step and every life saved celebrated as a victory.

Now, Planned Parenthood and other pro-abortion groups have dropped their self-described goal of  mere “choice” to embrace and work for abortion on demand up to birth (and even beyond) without apology as a “civil right”-and preferably taxpayer-funded.

However, as Missouri shows, a dedicated and positive pro-life movement can succeed in changing laws as well as attitudes about respecting every human life.